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Thursday, June 20, 2013

I don't normally swear on the blog, but yesterday evening I received a packet from Lindsey, my strategist with Take The Fight, with all of my UCLA medical records. After three attempts, we finally have the records that were originally requested two months ago. Getting medical records can be such a freaking headache. (Thank God for Lindsey!)

So yesterday evening, Danny and I dove into the records and read every single page. It was terrifying. It's never good to read, "Comment: The degree of cellularity and Ki67 labeling are worrisome." Or the other comment that the tumor is "highly vascular" which means there's a lot of blood flow to the tumor which is how it gets food to grow.

This morning I have been trying to redact my medical number from the pathology report and cytogenics report so that I can post them online, but I'm having trouble. After rereading both reports I decided to pull up my original reports from my first tumor resection to compare my Ki-67 and p53 percentages and both numbers have increased greatly. This sucks. This means that the tumor cells are proliferating much faster, and the tumor is much denser (as I understand it). Just when I'm feeling better from the surgery, and starting to gain confidence, I'm hit with a massive blow. I feel sick about it. I couldn't sleep until 2:00 am this morning, and my blood glucose is up into the 80's.

It might seem crazy to some that I'm reviewing over this stuff, and I do have to say that I wish I didn't know the facts, that I wish I was still ignorant, but it is so important for me to look at the exact DNA and abnormalities of my tumor so that I can target my treatments. It is terrifying to see that my tumor is becoming hungrier and thicker and a faster eater. "Slow down!", I want to say. "Chew your food 27 times before swallowing!"

I'm terrified and sad. That's just how life is, though. Ups and downs. Just when things are looking up (or you think they are), you get surprised and you have to change direction, work harder, or try to find a new solution to a problem.

Looking at the entire path & cyto reports make me really see the problems in my DNA, and its' inability to repair itself. This shiz is serious.

On a happier note, my house is swirling with the scent of peonies. Aunt Anne brought them from her garden. I have to say that the flowers are exactly what I need right now. Instead of crying, my throat will get tight, then I'll stick my nose in the peonies and take a big sniff. Thank God I don't have allergies.

Check out the Emma photo bomb :)

Ever since the second surgery I have felt like I wasn't going to beat this. I go in and out of trying to believe, of trying to de-stress, problem solve, and survive, but I can't seem to shake the uncanny feeling that this will be the death of me. Maybe I just need more treatments in my protocol, maybe I just don't know enough to be confident or that I just haven't researched how to fix some of my tumor's problems, but it all feels like such a long shot at this point. Not that I'm giving up - so far I just don't have it in me to give up - but I hate being so shaken, so unsure. It's not good for my soul.

3 comments:

Oh sweet girl! My heart aches for you and all your fear! If I had super-powers (like I used to pretend when I was little) I would take this all away from you--and everyone suffering!! I know I cannot do much but please know that I am always thinking of you, Danny and your family and hoping for that miracle that can erase all your fears just around the corner! If anyone will find it, it will be you!! Sending you so much love!

Hard to balance living and an illness, but you are rocking it! I see your joy kicking fear out of the way. It is a must to keep your joy tank filled or illness wins. Walking, writing, camping, what ever makes you happy, do it! What ever time any of us has, we need not to waste on things that don't matter. I see how much love fills your life, some people never have this in their many years of living. I have known those who have been gifted with many years, and those who were not to have many. I admire those who had lives well lived, the years given seem so secondary. I do not know how many years I am to have, but know I am grateful for each day. I also know God will take care of me after I leave this earth, so that calms any fear I might have. Life is filled with so many things, it is a wonder our heads don't spin off, what a ride. Hang on sweetie, you got this! God bless you.

Keep walking ahead and hang in there. I know it is hard. My pathology was a little worse the second time as well. At least it didn't go to grade III I tell myself. Even so, it is sickening to have to stare at your mortality in the face, not to mention all of the other issues that having a brain tumor causes--fatigue, weakness, etc. I think I told you before that I feel that each day I walk through the valley of the shadow of death. It is hard to live your life walking in that valley. Just like that valley mentioned in Psalm 23, I also take courage in the next line of that ancient song--I will fear no evil for thou (The Lord) is with me. At the end of my days, however that may be, I know that I will go to rest and live with Him forever. That doesn't mean I don't fight and want to live a long life with all of God's blessings on this beautiful earth but I can also have a deep peace. In one sense, it is two opposing ideas hanging in the balance each day. I pray that you could also find that peace. Keep fighting. Your fellow fighter.

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I am so grateful for the GoFundMe account that our friends set up. They started it last fall, because I stopped my treatments because of lack of funds, and now, possibly because of my lapse, I have a brain surgery scheduled for March 3rd, Dan's birthday. We are hopeful that our neurosurgeon will be able to remove the majority of the three brain tumors. But having it be out of state, it's complicated financially, and we are very thankful for your donations, and your prayers!

Disclaimer

This blog is intended to be informational, and hopefully at times, educational. It represents solely my personal opinion. This blog and my opinion are not meant to be construed as professional medical advice for any specific person or patient or condition. Qualified and licensed healthcare professionals should be consulted before considering or using any therapeutic product or drugs discussed in this blog. Definitely work with doctors and specialists to find your own cocktail approach. Please don't take my word for anything, do your own research.

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